Who Cares? How to Survive a System That Often Doesn’t
Welcome to Spicy Bananas, where nothing is off limits and everything is on the table. Today’s episode-turned-essay is for anyone who has ever walked into a clinic hopeful and walked out confused, dismissed, or flat-out steamrolled.
Our guest is Melissa Winger: patient rights advocate, speaker, healthcare quality professional, and author of Who Cares: The Real Patient Experience. Based in Minneapolis, Melissa became a full-time caregiver at 18 when her son was born with a rare chromosomal disorder. Nearly 30 years later, she is still fighting a system that too often treats patients like line items and families like afterthoughts. She is here to yank the curtain back and hand you a playbook.
Let’s be real. The system is not designed around you. That is the first mindset shift. Once you accept it, you can start playing to win.
The Moment You Realize You Are Not the Customer
Melissa learned early that the phrases “patient centered” and “family first” look good on wall art and PowerPoints, but collapse in the real world. In many settings, the actual customer is the payer, and the operational priority is documentation and liability, not dignity and outcomes.
You feel it the first time your valid concern gets brushed aside. You feel it when you are vulnerable, ill, post-op, or panicked, and the answer is a policy instead of care. That is not your imagination. That is the machine.
From Teen Pact to Mother-Bear Advocate
Her origin story is raw. A teenage pact to not graduate virgins. A prom date picked up at a barn party. A bold claim of sterility from a very cool guy who was very wrong. A pregnancy at 17. Prenatal care that was cursory and condescending. A son born with complex needs that were not recognized for months, despite obvious signs. And the drumbeat of judgment: babies having babies, out of wedlock, you must be overreacting.
What flips a conflict-avoidant teen into a lifelong advocate is not a seminar. It is a child who needs you to be the adult in a room full of professionals who are not listening. Enter the mother bear.
What Really Happens Behind the Curtain
Melissa has receipts. Years of them.
- Epidural out, no pain control. After kidney surgery at age one, her son’s epidural slid out of his back. Hours passed without analgesia. The fix was framed as no big deal.
- Pacemaker sensors left off. After Melissa developed a stress-induced arrhythmia, her pacemaker was implanted and… not fully activated. She was hospitalized again until the obvious was corrected.
- Tube yanked out by a watch. A nurse’s wristwatch caught a surgical drain and pulled it out. The nurse disappeared, mortified, while the family was left to manage the fallout.
- Unnecessary biopsy, massive bleed. A world-class center biopsied a section that had been biopsied six months earlier and had not fully healed. The repeat cut triggered a dangerous bleed, despite Melissa flagging the history repeatedly.
This is not about one hospital or one clinician. It is about a system where process and paperwork outrun memory and ownership, and where families pay the price. You can file a complaint. You can hire a lawyer. You can also need to be back in that same building next month. That is the impossible calculus families make every day.
The Insurance Maze: Why You Feel Outgunned
The US insurance ecosystem is designed for insiders. Even insiders do not understand the whole sausage factory. If a claim is denied or a drug is not on formulary, you are suddenly expected to learn an industry while you are sick. That is not a flaw. That is the model. The answer is not to become an expert overnight. The answer is to get help fast, document everything, and escalate with precision.
Advocacy Without Setting the Room on Fire
Yelling is cathartic. It is rarely effective. The goal is not to make enemies in the place that holds your chart. The goal is to move the system.
Here is how Melissa advocates in the room.
- Lead with partnership, not performance. “This happened. Here is what we need to do so it does not happen again.”
- Separate the human from the error. Most frontline errors are unintentional. Shame shuts people down. Collaboration keeps them in the fix.
- Aim at redesign. Use incidents to push for checklists, cross-checks, and safer defaults. “Who else needs to know so the next patient is protected?”
- Escalate with receipts. When you have to go up a level, show dates, names, and exact statements. Precision beats volume.
And when you hit the wall, use the line that titles her book. “I want someone to care.” Say it until the room hears you.
Receipts or It Did Not Happen: Your Paper Trail
If you remember one section, make it this one.
Bring a buddy. A second set of ears catches what adrenaline misses.
Record or take notes. If legal in your location, record visits, or ask your clinician to summarize the plan while you write it down. Always confirm next steps out loud.
Collect your records. Get copies of clinic notes, discharge summaries, operative reports, imaging on disc, device reports, and medication lists. Do not assume electronic systems are accurate or connected.
Keep a timeline. Date, location, provider, action taken, outcome, next step. One page. You will refer to it constantly.
Use the portal wisely. Ask clarifying questions in writing. It creates a timestamped trail.
Legal note: Recording laws vary by location. In two-party consent jurisdictions, you must inform and get consent before you record. When in doubt, ask to record. If no, ask the provider to summarize the plan while you take notes.
Power Phrases For Appointments
- “Before we start, I want to repeat our goal for today.”
- “Can you explain that to me in plain language and then again with specifics I can write down?”
- “What are the risks if we wait, and what are the risks if we act now?”
- “What would you do for your own family member in my situation?”
- “Who is accountable for the next step, by when, and how will we confirm it happened?”
- “Please put that in the chart.”
- “I am concerned this was an error. How do we prevent it for the next patient?”
Discharge and Procedure Checklists
Before discharge
- Do I have the diagnosis in writing, the medication list, and the red flag symptoms that mean return now
- Who do I call after hours
- What follow-up is scheduled, and who owns the referral
- Wound care and equipment instructions confirmed, with supplies in hand
- Pain plan clear, including what to do if the plan fails
Before a procedure
- Confirm identity, procedure, site, and laterality out loud
- Ask who is monitoring pain control and device settings in recovery
- Clarify what happens if equipment fails, and who will be paged
If Melissa Ran the System
Melissa would start with payment. Pay for outcomes, not just throughput. Reduce administrative bloat that adds cost without value. Align reimbursement so clinicians are not financially penalized for caring for complex or publicly insured patients. Simplify authorizations and documentation so the default is care, not denial by delay.
Will one person fix the machine No. Will a chorus of informed, relentless families force leaders to move Yes. It is already happening in pockets. Add your voice.
Joy Anyway
Here is the part the system cannot compute. Melissa’s son is a riot. Nonverbal, yes. Disabled, yes. Also a daily costume king who rotates characters and wardrobes with Broadway commitment. Willy Wonka on Monday. Sheriff on Tuesday. Three outfit changes by lunch. Pocket square mandatory. There is delight in that house.
There is also a mother who finally gave herself permission to live. She placed her son in a group home he enjoys. She went on a ten-day solo cruise. She says yes now. Concerts. Vacations. Poolside friends who volunteered to chaperone the woman with the sun hat and zero plan. She did not stop being a caregiver. She stopped disappearing.
If You Are Scared to Speak Up
You are not dramatic. You are not difficult. You are responsible.
Start with one sentence: “Here is my concern and here is the outcome I need.”
If you shake, speak anyway. If you cry, speak anyway. If they bristle, return to the plan. You are not asking for special favors. You are asking for safe care.
And if someone implies your loved one’s life is less worthy because he cannot repay the cost, remember Melissa’s line that silences the room: He is a human being with rights, like everyone else.
Where to Find Melissa
- Book: Who Cares: The Real Patient Experience
- Website: whocaresbooks.com
- Also on Amazon and Barnes & Noble
- Audiobook version planned in the timeline Melissa shared
Check the episode notes for links.
Final Word
If the system has ever made you feel small, confused, or disposable, you are exactly who this was written for. You do not need perfect words. You need a spine of facts, a short list of power phrases, and the stubborn belief that care should feel like care.
If this fired you up, share it with a caregiver who is running on fumes. Hit follow. Drop a five-star rating so more families find practical, real talk like this.
You are not alone. You are not powerless. And you are absolutely allowed to demand better.
🎧 Listen to the full episode now:
👉The Truth About Healthcare They Don’t Want You to Know
– Episode 6